Connecting ALS

Connecting ALS is a weekly podcast produced by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter. Through conversations, interviews, and audio documentaries we aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community. Subscribe today at ConnectingALS.org/Subscribe or wherever you get your #podcasts. For more information on the MN/ND/SD Chapter of the ALS Association visit: alsmn.org

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Welcome to Connecting ALS.  This week, Mike and Jeremy are joined by Sue Seabrook; a wife, a mom, a sister, and a caregiver for her mother living with ALS. Sue talks about the ways her family is embracing all the moments that matter in life. Read more about the moments that matter to Sue at https://www.als.org/blog/my-mother-heartbeat-our-family This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

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Welcome to Connecting ALS.  This week, Mike and Jeremy are joined by Rebecca Wetzel, an educator and philanthropist, who partnered with The ALS Association to launch the ALS Youth Challenge in 2019. Rebecca shares the inspiration behind the Youth Challenge, a unique virtual opportunity for kids to get involved in 2021, and how the Youth Challenge is empowering kids to raise awareness of ALS. Youth Action Day is scheduled for May 15, 2021. Find ways to get kids in your neighborhood involved at  https://www.als.org/get-involved/als-youth-challenge To learn more about the ALS Youth Challenge, go to https://www.als.org/blog/challenging-youth-join-fight This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

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Welcome to Connecting ALS.  This week, Mike and Jeremy talk to Dr. Chris Nowinski, co-founder and CEO of the Concussion Legacy Foundation, to check in on the state of research into the connection between frequent traumatic brain injuries and neurological diseases. 

For more information about the need for more research into the connection between ALS and frequent brain injuries, go to https://www.als.org/blog/can-football-cause-als-look-research 

Learn more about the Concussion Legacy Foundation at https://concussionfoundation.org/

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

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Welcome to Connecting ALS.  This week, Mike and Jeremy are joined by Amy Roman, a speech and language pathologist at the Forbes Norris ALS Research and Treatment Center at California Pacific Medical Center in San Francisco, to discuss recent changes to Medicare that will expand access to telehealth to include speech-language pathology. To learn more about the coding changes at CMS, go to https://www.als.org/blog/cms-expands-telehealth-coverage-speech-language-pathology-services-another-win-als-community Learn more about The ALS Association’s public policy priorities at https://www.als.org/advocacy/our-priorities For more information about efforts to permanently expand access to telehealth, read https://www.als.org/sites/default/files/2021-03/ALS%20Association%20Statement%20-%20The%20Future%20of%20Telehealth_FINAL.pdf This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

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Welcome to Connecting ALS.  This week, Mike and Jeremy get out of the way as Sandra Sullivan, The ALS Association’s director of chapter communications, talks to Sarah Trott, a former contestant on The Bachelor, about her connection to ALS and her work trying to support and connect young caregivers like herself around the country. To learn more about Sarah Trott’s ALS journey, go to https://www.sandiegouniontribune.com/caregiver/news-for-caregivers/story/2021-03-16/from-caregiver-to-spokeswoman-former-bachelor-contestant-speaks-out-for-als If you are a caregiver and want to join Sarah’s caregiver community on Facebook, go to https://www.facebook.com/groups/144164414015354?modal=false&should_open_composer=false Find caregiver support resources at https://www.als.org/navigating-als/for-caregivers This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

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Welcome to Connecting ALS. This week Mike and Jeremy are joined by David Van de Riet, a member of The ALS Association national board of trustees, and Kendra Albers, director of development at The ALS Association Greater Chicago Chapter. The 2021 spring Walk to Defeat ALS season is upon us, and we dig into the creative, innovative ways walk teams are embracing the opportunity to Walk Your Way. To find a Walk to Defeat ALS in your community, go to https://secure2.convio.net/alsa/site/SPageServer/;jsessionid=00000000.app20094b?NONCE_TOKEN=EE901DDCE5B0CC95F80447FAF582602E&pagename=WLK_landing To learn more about how the Walk to Defeat ALS will encourage participants to Walk Your Way, go to https://www.als.org/blog/walk-defeat-als-continues-march-safely-spring This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

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Welcome to Connecting ALS.  This week, Mike and Jeremy are joined by Chuck Haberstroh and Adam Wilson, co-chairs of the committee who led the fight to create Lou Gehrig Day, an annual day for Major League Baseball teams to raise awareness of ALS and deepen the long-standing relationship between MLB and the ALS community. Read more about the fight to create Lou Gehrig Day at https://www.als.org/blog/its-official-all-30-major-league-baseball-teams-endorse-league-wide-lou-gehrig-day To learn more about Lou Gehrig and the history of ALS, go to https://www.als.org/understanding-als/lou-gehrig Check out a biographer’s reflections on Lou Gehrig’s legacy at https://www.als.org/blog/biographer-reflects-lou-gehrigs-legacy This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

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This week, Mike and Jeremy welcome back Ashley Smith, The ALS Association's Associate Director of Grassroots Advocacy, for an overview of 2021 legislative and appropriation priorities. To learn more about how you can get involved as an ALS advocate, visit als.org/advocacy Click here for additional information on The ALS Association's 2021 Public Policy Priorities For more on the life and research of Dr. Michael Bereman, click here. This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

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Welcome to Connecting ALS.  This week, Mike and Jeremy recognize Patient Safety Awareness Week and turn to Leslie Ryan, director of education & professional development programs at The ALS Association for some tips on preventing medical harms in hospital settings. Mike then welcomes Lauren Brown, the nurse coordinator at the Providence ALS Center in celebration of Certified Nurse’s Day. 

To access medical information materials that will help health care provider tailor their care to your needs, go to https://www.als.org/navigating-als/resources/medical-information-materials 

To hear more from Lauren Brown on the role nurse coordinators play on the multidisciplinary care team, go to https://www.youtube.com/watch?v=sKJDT5qHWJA This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

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Welcome to Connecting ALS.  This week, Mike and Jeremy are joined by Megan Frisk, a dietician and the care services coordinator at The ALS Association Rocky Mountain Chapter. March is National Nutrition Month, and Megan serves up some helpful tips on maintaining good nutrition while living with ALS. For more information on nutritional support for people with ALS, check out https://www.als.org/navigating-als/resources/maintaining-good-nutrition-als This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

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Welcome to Connecting ALS.  This week, Mike and Jeremy are joined by Dr. Kuldip Dave, vice president of research at The ALS Association, to discuss some recent news in ALS research and signs of hope on the horizon. To learn more about research into NU-9, go to https://eurekalert.org/pub_releases/2021-02/nu-and021921.php For more information on The ALS Association’s support for Dr. Ozdinler’s research into upper motor neurons, check out https://www.als.org/research/research-we-fund/funded-grants Read about The ALS Association’s support for Dr. Stanley Appel’s research into regulatory T-lymphocytes at https://www.als.org/blog/als-association-als-finding-cure-and-mda-co-fund-clinical-trial-grant-study-restoring-immune This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

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Welcome to Connecting ALS.  This week, Mike and Jeremy are joined by Debbie Drell, director of membership at the National Organization for Rare Disorders, to discuss Rare Disease Day, the origin of NORD’s “Show Your Stripes” campaign and how NORD’s patient advocacy work has continued during the pandemic. 

For more information on Show Your Stripes go to https://rarediseases.org/rare-disease-day/

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

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Welcome to Connecting ALS.  This week, Mike and Jeremy explore the challenges of traveling while living with ALS and some ways to plan ahead to make your next trip a success. Stay up to date on the latest CDC guidance on travel during the COVID-19 pandemic at https://www.cdc.gov/coronavirus/2019-ncov/travelers/travel-during-covid19.html For tips on traveling while living with ALS go to https://teamgleason.org/wp-content/uploads/2019/06/Flying-with-ALS_-Power-Wheelchair-and-Ventilator.pdf To know more about Jeremy Van Tress, check out https://www.waldenu.edu/programs/resource/walden-military-pride-meet-jeremy-van-tress Learn more about Accessible Go at https://accessiblego.com/home This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

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Welcome to Connecting ALS.  This week, Mike and Jeremy commemorate International Day of Women and Girls in Science with Drs. Ericka Greene and Sandrine Da Cruz, who give us updates on their ALS research and talk about what is being done to break down barriers to recruit more women into scientific research. 

To learn more about International Day of Women and Girls in Science, go to https://www.un.org/en/observances/women-and-girls-in-science-day 

For more information about Dr. Ericka Green’s research at Houston Methodist go to https://www.houstonmethodist.org/faculty/ericka-p-greene/ 

Read about Dr. Sandrine Da Cruz’s research at VIB-KU Leuven Center Brain and Disease Research at https://cbd.vib.be/labs/da-cruz-lab This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

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Welcome to Connecting ALS.  This week, Mike and Jeremy are joined by Dr. Sarah Parvanta, director of ALS Focus, to learn how the voices of ALS caregivers are being elevated to make sure services and programs are tailored to their needs. To learn more about the ALS Focus, go to https://www.als.org/research/als-focus To register for ALS Focus or to log in to participate in the current survey, go to https://www.neuroserver.org/als-focus/Home/login Check out the results of previous ALS Focus surveys at https://www.als.org/research/als-focus/survey-results This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

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Welcome to Connecting ALS.  In this bonus episode, Mike has a conversation with legendary Major League Baseball umpire, Phil Cuzzi, about his personal connection to ALS and what he's doing to make a difference. Click here to learn more about Phil's upcoming fundraiser benefiting the ALS community. This episode was produced by Mike Stephenson and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

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Welcome to Connecting ALS. This week, Mike and Jeremy are joined by Dr. Richard Bedlack, director of the Duke ALS Clinic, for an update on the COVID-19 pandemic and the latest on access to vaccines. To stay up to date on COVID-19 vaccine access, go to https://www.als.org/navigating-als/living-with-als/covid-vaccines For more information on ROAR, go to: https://medschool.duke.edu/about-us/news-and-communications/som-magnify/bold-approach-caring-als-patients This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.